I dread the dawn’s recurrent light;
I hate to go to bed at night.
Every night, there’s a
for my head
I fight my own brain for control over our consciousness. I want to sleep. It wants to stay awake.
My weapons are climate control, black-out blinds, running myself ragged during the day, weighted blankets, white noise machines, special pillows, and a pharmacopeia of OTC and prescription medications. Its weapon is the fact that it laughs in the face of mine.
Insomnia is a brain-based disorder I’ve had since I was at least 16 years old.
I have plotted the murder of my brain on more than one occasion, and desperately wish it were possible to die temporarily.
Anti-anxiety medicine doesn’t help, except when there’s external anxiety exacerbating the problem. Sleep hygiene is irrelevant, because it doesn’t address the problem; regardless, I have submitted to it five different times, including having sleep specialists actually come to my home and advise me on rearranging furniture, buying special pillows, forbidding TVs in the bedroom, telling me the bed was for nothing but sleep, sex and reading, and when that didn’t work, then nothing but sleep. Period. That was the biggest failure of all.
Many nights, getting into bed feels like trying to talk myself down from a ledge.
29 July, 2021
Right now, I am on the strangest sleep/wake schedule, which I would bitch about, except it seems to be working. That is to say, I’m getting a lot of sleep, and taking not much medicine. A lot of sleep for me, and not a lot of medicine, for me.
For the last two months or so, I have easily been sleeping about 7 hours out of every 24, and sometimes even more, and while I am still taking melatonin, topiramate, and desipramine, I haven’t taken a PRN in weeks.
But here is what is happening: I’m going to bed at 5pm. Sometimes earlier. Yes, I actually go to bed at 4pm some days, like a toddler. I sleep until somewhere between 10pm and midnight, and then get up and stay up until about 7am. At this point, there are sometimes a few things I have to do, and don’t get back to bed until 8am, but sometimes I roll back into bed right around 7am, and sleep until maybe 9:30. Once in a while, I get a little tired in the early afternoon, and sleep from 1-2.
It’s great. When I am awake, I feel so rested, it’s like someone just invented electricity. I’ve been walking around with an oil lamp for years, but now suddenly everything is lit like day.
Unfortunately, it’s not going to last. It’s a fringe benefit of the pandemic, all the working from home, and having an excuse to live off savings (which is going to bite me in the ass, but it hasn’t yet). I get to sleep where and when I want, like a high schooler on summer break.
However, on August 2, start-of-the-year training begins, and on the 17th, work begins in earnest. This means I’ve got a week to get myself back in sync with the rest of the adult world, more or less.
PRNs, alarm clocks, coffee. Feeling tired, and worrying about falling asleep on the drive into work.
The one bright star in the sky is that on Thursday the 5th, I finally get the sleep monitor I need to wear to get into a new sleep study in order to get prescriptions for any new medications that may be out there, which I have never tried, and which may work better than my old stand-bys.
In other news, my doctor thinks that because I work with children, who can’t yet receive COVID vaccines, and because the Delta variant is now out there, I should get the Pfizer vaccine. I have had the J&J vaccine (last March), and while it offers protection against the Delta variant, it seems to be the least effective—which is not to say ineffective, it’s just that when you rank them, it doesn’t come out on top. More importantly, though, it seems that having both vaccines is more effective than having either one alone.
Being over-vaccinated is the story of my life, though. I went to live in the Soviet Union for a year when I was 10, and just prior, had a whole extra set of childhood boosters that my doctor thought was a good idea, in addition to the TB vaccine. I had an extra polio in high school, because there was a page missing in my file, and an extra measles in college because there was an outbreak, and it was easier than getting proof of vaccine. Then, I enlisted in the military, and got a whole ‘nother series of childhood vaccines, including not just the ones I already had, but all the ones that had been invented since my childhood (Hib & chickenpox, off the top of my head). I had the hep vaccines for work in the 90s, and extra boosters before I went to Costa Rica a few years ago, and typhoid as well. I’ve had the flu vaccine every year since I can’t remember when.
But better too much than too little. Just like sleep.
4 June, 2021
If you have been counting, my insomnia takes 4 prescription PRN (as needed) medications, 3 regular prescription medications, as well as several OTC meds that my doctor has recommended—some of them are pain medications, which anyone might carry, one is melatonin, another medication that is pretty common, and the others are vitamins or allergy medicines, except for one that I struggled with a bit—it is meant to reduce cortisol levels, and thus reduce stress. All meant to keep biological processes humming along, so that nothing wakes me up at night.
I struggled with that last one for a number of reasons. The first is that it is a “supplement,” not a real medication, in spite of the fact that it is, in my case, recommended by a doctor. The second is that cortisol is caused by stress; it doesn’t cause stress, so I am not convinced that eliminating cortisol will make me feel less stressed, and thus sleep better. But I am not the doctor in the equation. The final reason is that among the ingredients are Omega fatty acids, which may be fish-derived. I don’t actually know, but I have checked around, and there does not seem to be another source other than raw milk, and there in much smaller amounts.
If I could know for sure the source for my supplements were milk, it would make me very happy, but I just doubt this is the case, and since I have been a vegetarian since 1986, taking a supplement with a fish ingredient is awkward.
Now, I’m sure I’ve taken medications with animal ingredients before. I’ve probably had capsules that were made of gelatin before. But those were always much more necessary medicines—antibiotics, and the like. And real medicines, not supplements. Albeit a long-time vegetarian, I find it easy not to encounter cognitive dissonance when taking prescribed medications with animal products; medications are necessary, for one, and for another, the line between food and medicine is sharply cut. Between food and supplements, not so much. And as a Jew, I know that the laws of kashrut are absolutely clear: they apply to food eaten for sustenance or pleasure. They do not apply to medicine taken for health. There is a blessing for every kind of food you put in your mouth, but no blessing for taking medicine.*
But that’s not the point. The point is that I take a lot of pills, tables, capsules, etc. on a daily basis.
I have learned that pills in unlabeled bottles—or even improperly labeled—can get you charged with a lesser charge of drug-trafficking called possession of “legend drugs.” I was charged with this after a traffic accident when medications in unlabeled containers (those day-of-the-week AM/PM containers, plus a pocket-pack that looks like a make-up compact) were in my car and my pocket. I received an $80 ticket for “legend drugs.” I had to call a lawyer friend to decode the term for me.
A hearing was scheduled for my ticket, as for any one, and I showed up with evidence (copies of prescriptions, and pictures of the medications) that every drug they found was in fact prescribed for me, or was an OTC medication, and in this particular case, none was a controlled substance. They were mostly OTC pain meds, allergy pills, plus an antibiotic I happened to be on for a UTI, and some medication for migraine headaches. Nothing had any street value. The ticket was dismissed.
Had I been on any of my sleep PRNs at the time, and had something like a benzodiazepine, or Ambien with me—drugs that do, in fact, have a pretty good street value, and are schedule 2 or 3 drugs, it’s unlikely the ticket would have been dismissed, and not only that, but I maybe would have been better off just paying it, and not even letting it be known that I had anything like that with me while I was getting into car accidents, prescription or not, currently present in my system or not.
That was all prelude to my actual topic. For those of you with scorecards, I have 16 medications that I have to tote with me any place I go. Having learned my lesson once, and learned it well, everything goes in a prescription or commercial bottle.
When I buy OTC meds, I buy the large economy bottles, except once. I have one small bottle for everything that I keep around for travel. A 24 pill bottle of Rapid Release Tylenol, a 24 pill bottle of famotidine (for heartburn), a 24 pill bottle of my multivitamin. Every time I get a new prescription bottle, I put the old one aside in case I need to travel; I’ll have a second bottle to carry just enough pills for however long the trip is.
I have a Scooby-doo lunchbox I found at Goodwill, and all the bottles go into it, and then into my carry-on when I fly. I don’t trust the medication to baggage handling. If the bag with the medication got lost, even for a day, I’d be lost.
I went to Israel in 2017, and some of my medications were going to come up for refill while I was there. I was there for just two weeks, but it was still a problem, because one of the medications was a daily. My doctor wrote a new prescription, this time for 60 days instead of 30, and I crossed my fingers that insurance let it go through. It did.
Then, in the summer of 2018, I went to Costa Rica for six weeks for intensive Spanish courses (and the immersion experience). This time, every medication would come for renewal. I needed somehow to get a 45-day supply, and that included the ones that were controlled substances.
This one took a phone call to my insurance company, which wanted to see an image of my itinerary from the airline I was using before it would approve a 2-month prescription. I guess 6-week prescriptions don’t exist.
It did all come together in the end, though. I’ve gone to Greece, Israel, Costa Rica, and taken several domestic flights that were fairly long and required stopovers (flying to California was more complicated, and took longer, than flying to Costa Rica). My luggage always did make it, but I had the medication in a carry-on nonetheless.xIt means that I can’t fly low-end coach. Sometimes I fly first class, if I think that is the only way to absolutely guarantee having my carry-on with me—you are in the first boarding group, and get the pick of spots in the overhead bins, or underseat space.
Usually, I fly what is called “Economy Plus” on most planes. You get a few more inches on each side, and several more for your legs, and the seat leans back farther than the seats in regular economy, aka, “coach.” However, the reason I pay the extra money is that with Economy Plus, you can reserve your seat, and for a fee that is usually around $25, get a guarantee that you’ll have in-cabin space for your carry-on. Reserving my seat is important, because I don’t want to be in the very front seat—there’s no underseat stowage.
It’s the policy of most airlines to state that they do not lose luggage. It gets misrouted only when you miss a flight and have to take a different one, or when you hand-transfer for an international flight, and make the mistake yourself. Thus, telling them that you need to keep a bag with you as it is crucial that it not get misrouted, delayed or lost, will not be met with any sympathy, just more assertions that they do not lose luggage.
If you say you are worried that someone else might take your bag by mistake off the belt in baggage claim, they will offer not to put it on the belt, but set it aside with the strollers, wheelchairs, and occasional valuable pieces that people can pick up only when they show the matching ticket.
So you find your own solution.
I guess I should just count myself lucky that I can.
* There is a prayer for a medication to be effective, but it is not formatted like all the blessings for the different kinds of food.
4 May, 2021
On a crowd-sourcing question/answer site in which I participate, someone recently posted this:
I put my 11-year-old child strictly to bed at 6:30 PM. Is this a good time to put your kids to bed?
This really hit a nerve, and a raw one; my parents used to put me to bed very early, and their reasoning was this: if they put me to bed at 8pm, and I did not fall asleep until 9, then I needed to go to bed at 7pm in order to be asleep be 8pm. Of course, I still didn’t fall asleep until 9. I lay awake, getting to know the callous dark that would become my longtime companion. My parents would check on me when they went to bed, and so I feigned sleep, lest they put me to bed even earlier. This began when I was about 7.
It’s pure speculation that my parents’ unrealistic ideas about bedtimes directly contributed to my insomnia. After all, I have EEGs that show abnormal wave patterns during sleep. But I also have no memories of falling asleep effortlessly. I know the really awful night of fits and starts, of sleeping just 3 or 4 hours, began when I was a teenager. But I really have no nights of pure innocence, unless they were when I was so young I have no ability to remember them.
I got a response from someone who read my answer:
That’s a very interesting idea on insomnia being caused by that. I remember my mom wanting me to be in bed by 7 when I was 9. I too read under the covers for multiple hours, since I wasn’t even close to being tired. And now…bad insomnia.
Two anecdotes are not data, of course, but the amassing of anecdotes is often what precedes the systematic collection of data.
I discovered how to read surreptitiously, and other ways of prevaricating, including tricking my parents into no longer checking on me. When my parents cracked my door, I pretended that I had been asleep, but they had awakened me. After about four nights of that, they stopped checking.
In order not to be caught reading, I stuffed a towel over the crack under my door, then turned on my bedside lamp with a low wattage bulb I’d swiped— the lamp was designed for a 100W, but I put in a 40W, and read for about 2 hours. Every night.
Insomnia may also be responsible for the 720 I scored on the verbal portion of the SAT.
Reading in secret began in the 3rd grade, though. Before that, for probably close to a year, I lay in bed each night worrying that if I didn’t fall asleep, I’d get an even earlier bedtime, and the worry actually KEPT ME AWAKE. It’s a horrible circle to be trapped in.
Sometimes it seems like that—a circle, I go round and round, and get nowhere. Other times, it’s even more frightening. It goes round and round, but it’s a spiral going downward. I don’t know what is at the bottom, or even if it has a bottom, but with each loop, my anxiety increases.
Staring wide-eyed into the darkness is frightening and lonely, and makes me feel very small, but when I close my eyes, I see the spiral going round and round. That’s when, in spite of all advice to the contrary, I decide to fall asleep with the TV on.
28 Apr., 2021
So, on a particularly fallow night, with nothing better to do, I am alone with the word “insomnia,” which flirts shamelessly. It wants me to take it out for a Google, and I relent, finally, at 3am. On this night, I ran across a scare article about the dangers of (OMG!)
Ambien addiction. Ambien is the original brand name of a fairly commonly prescribed sleeping pill called zolpidem tartrate, usually referred to as just “zolpidem,” but sometimes called by the brand name “Ambien” as well, even to refer to the generic drug.
Zolpidem was designed to be a less addictive version of barbiturates (eg, phenobarbital) and sedative-hypnotics (eg, benzodiazepines such as Valium/diazepam, and Restoril/temazepam), with fewer side effects. With zolpidem, it was hoped, people needing insomnia medications would not experience morning hangover, and the problem of addiction to sleeping pills would go away.
I’ve never taken barbiturates, and I’ve never been addicted to anything, but I’ve taken several things in the diazepam and temazepam families, and can attest to the nature and number of side effects those drugs bring. They are burdensome, and difficult to manage.
Ambien first entered the market in 1992. That last bit is important. It was nearly 30 years ago. There are people able to prescribe this drug today, who were not even born when the drug entered the market. Bear this in mind. That is only five years after Prozac was rolled out, and four years before Detrol gave the world “Overactive bladder syndrome.” Keytruda, considered a fairly standard first-line cancer drug now, has been around only since 2014.
In 1992, practically everything else a doctor could prescribe for insomnia was either a daily pill for some other condition which had somnolence as a side effect (seizure drugs, or antipsychotic drugs mainly), and other side effects as well, such as weight gain; or a HIGHLY addictive drug from the classes of barbiturates, or benzodiazepines (sedatives/hypnotics), none of which was intended to be used long term.
The latter drugs are sometimes described as “dangerously” addictive, because it is possible to become addicted to them even when taking them exactly as directed. This is something else that should be borne in mind when considering the relative “evils” of zolpidem.
Now, practically any drug will lead to bad outcomes if abused. Even taking high doses of vitamin C can lead to a sort of addiction, which is to say, that going “cold turkey” off high doses of vitamin C, even while still getting the USRDA, can lead to something called “reverse scurvy.” Basically, you can get scurvy symptoms in spite of getting adequate vitamin C, because your body has become accustomed to eliminating most of your intake. If you want to kick a vitamin C habit, better to taper off. There are risks to high doses of vitamin C, including iron poisoning, and kidney stones, so good reasons to kick it, too.
You can actually overdose on several vitamins, and a number of OTC cold remedies, as well as acetaminophen (Tylenol). But you can take them as directed indefinitely without any problem, provided your general health is good.
Anyway, Ambien, zolpidem. It works by binding to GABAA receptors, which are the same receptors used by benzodiazepines. Therefore, zolpidem works in a similar manner to Valium; however, the big difference is that, because zolpidem has been “tweaked” in the lab, its half-life is only about 3 hours. The half-life of Xanax (alprazolam) is 11-12 hours; Valium (diazepam) is about 40 hours, and Klonopin (clonazepam) is over 30 hours. This is why Xanax is good for panic attacks, and Valium and Klonopin are excellent for suppressing seizures, but prescribed as sleeping pills, they are addictive even when taken as directed. Someone taking one tablet of Valium every night takes tonight’s dose before last night’s has cleared their system. This also explains why zolpidem is much less likely to result in a morning fog.
It may seem counter-intuitive, but zolpidem is also more effective as a PRN than drugs with a long half-life. Trying to go to sleep the second night after taking a dose of Valium often does not work, and the reasons are complicated. The medication has not reached its first half-life mark, but that is actually what makes it problematic—the insomniac taking Valium learns to function the day after a dose, when the medication is still active in their system, instead of having passed through two or three half-lives, as zolpidem will have by the time they start their day.
Having learned to function all day with Valium in their system, the insomniac finds it becomes less effective as a sleep medication.
In addition, there is the psychological effect of taking a pill, and then feeling sleepy. This is part of the same phenomenon that gives us the placebo response, and the reason that in placebo-controlled drug trials, the placebo must look, and be administered, EXACTLY as the active drug.
Zolpidem, meanwhile, has gone through three half-lives in nine hours. Someone who takes it at 10pm has less than an effective dose by 7am the next morning, and a clear system by 10pm the next night.
Yet, according to the scare article, if you suddenly stop using zolpidem, you may have withdrawal symptoms such as nausea, vomiting, flushing, stomach cramps, nervousness, shakiness.
To help prevent withdrawal, your doctor may lower your dose slowly. Withdrawal is more likely if you have used zolpidem for a long time or in high doses. Tell your doctor or pharmacist right away if you have withdrawal.
The article glosses over the fact that “high doses” means “not as prescribed.” It then continues to chronicle the woes of the zolpidem mire:
Abuse, Addiction, and Withdrawal
[R]esearch has shown that Ambien can produce tolerance, dependency, and withdrawal…. One of the most serious side effects [is] needing Ambien in order to feel comfortable and function normally [when awake].
Averting our eyes from the misuse of the term “side effects” for the moment, we can note that at least it is acknowledged that “If Ambien is taken according to a doctor’s orders and used on a short-term basis, chemical dependency and addiction are unlikely to develop.”
And that it is
Recreational users [who] often take Ambien in unsafe ways, such as crushing the drug into a powder and mixing it with alcoholic beverages or snorting it. Taking Ambien this way significantly increases the risk of over-sedation, overdose, and addiction.
We are introduced to a case study of a zolpidem abuser who took “excessively high doses,” and “discontinued [it] too quickly.” She experienced vaguely described “severe withdrawal symptoms,” which, after mentioning, the article goes on to say that
“Additional withdrawal symptoms may include:
Without averring that “the woman” previously mentioned had experienced any of them, and yet the final effect is to link the list of symptoms with a real-life case.
We get to read a bit about burgeoning treatment centers for people addicted to prescription drugs, then the article allows that “[zolpidem] helps many people”; nonetheless, “this medication may sometimes cause addiction,” and suggests that one, “take this medication exactly as prescribed to lower the risk of addiction. Ask your doctor or pharmacist for more details.”
We are treated to another bullet list of side effects:
- Depression and/or suicidal thoughts
- Emotional blunting
- Impaired vision
- Loss of appetite
- Inability to concentrate
- Memory loss
- Allergic reaction
- Muscle Cramps
- Rapid heartbeat
And told that “Finding a medication that provides satisfying sleep without serious side effects can be challenging.” Gee, really? That’s how I ended up with zolpidem in the first place.
Still, we are informed, “Some users have had a life-threatening allergic reaction to zolpidem.” Yeah. Some users have that reaction to penicillin. Some people have it to their high blood pressure medication—lisinopril is notorious for doing this to people even after they have taken it safely for more than a year. Heck, some people react this way to eggs or peanuts. I once met a guy allergic to cucumbers, which are 95% water. This isn’t really a strike against zolpidem, as far as I’m concerned, as much as an acknowledgement that no matter what it is, somewhere, someone is allergic to it.
What follows is a plug for a treatment center.
Then, “Cognitive Impairment.”
I’ll give them this. I’m cognitively impaired any time I’m asleep.
I’ll give them this. I’m cognitively impaired any time I’m asleep.
Sleepwalking and Other Activities
After taking Ambien before going to sleep, some individuals have experienced episodes of sleep walking and other unconscious behaviors. These activities include eating, driving, having sex, and holding conversations with other people. In these reported cases, the individuals were unaware of these activities while they were occurring.
For some users, sleep behaviors can be corrected by reducing the dose of Ambien, but in extreme cases, the drug may have to be discontinued in order to prevent the behavior.
I’m not skeptical of these things. I’m sure they have happened, just as I’m sure people have misused the medication, and developed dependency on it—I don’t know whether it’s the same kind of dependency that people can develop on alcohol or heroin, where sudden withdrawal can be deadly (and incidentally, during which, Valium is often used to prevent seizures), but I’m sure that withdrawal can be unpleasant for some people.
However, the insert that comes with every zolpidem prescription, whether you ask for it or not, warns you that the medication should not be taken by people with any of the following conditions: obstructive sleep apnea, myasthenia gravis, severe liver disease, respiratory depression, psychotic illnesses; nor by children. It should also not be taken by people who have a history of addiction to anything. The insert further says not to take the medication with alcohol.
I do not believe that never has anyone read the warnings and dismissed them. I don’t think that people who had problems with zolpidem were somehow failed by the cautionary system. I was made hyper-aware of them; in order for my doctor to agree to write me a prescription for the medication to begin with, I had to sign a piece of paper stating that I would not drink alcohol, nor use any illegal drug as long as I was taking zolpidem.
I’m sure a lot of problems blamed on the nature of zolpidem actually come from ignoring these warnings. It’s a little like blaming drunk driving on the nature of the automobile.
WebMD has an article on using zolpidem that is taken pretty much verbatim from the paper you get from the pharmacy: How to use Ambien. Especially relevant are the following passages: “Since zolpidem works quickly, take it right before you get into bed,” and “Do not take a dose of this drug unless you have time for a full night’s sleep of at least 7 to 8 hours.”
From How to use Ambien:
Take this medication by mouth on an empty stomach…. Since zolpidem works quickly, take it right before you get into bed. Do not take it with or after a meal because it will not work as quickly.
Do not take a dose of this drug unless you have time for a full night’s sleep of at least 7 to 8 hours. If you have to wake up before that, you may have some memory loss, https://www.webmd.com/brain/memory-loss and may have trouble safely doing any activity that requires alertness, such as driving or operating machinery.
That part about going right to bed is important. Zolpidem works fast. It works so fast, that I take it in bed. I don’t even want to walk from the kitchen into the bedroom, and climb up into the loft after taking it.
For the record, I have had prescriptions for zolpidem for more than 15 years. I take it as a PRN, which means I don’t take it every night. I take it only if I don’t fall asleep after 30 minutes, and then, I take 5mg, not the maximum dose of 10mg. I took it for several years, then didn’t take it for three years because I was pregnant, and breastfeeding. I didn’t experience any of the symptoms of withdrawal (didn’t get a lot of sleep, though, except in my third trimester, when I was exhausted all the time). I may take it several days in a row, then not take it for more than a week.
I take it as directed. I never take more than 10mg, and usually less. I don’t drink. I don’t take drugs that are not prescribed for me, with the exception of OTC pain medications (Tylenol, mostly).
I have had a few people accuse me of being addicted to it simply due to my long term use, but I don’t think they have a good handle on the meaning of addiction. Given any block of days, I am likely to have taken it for fewer than 50% of them. If that is addiction, then I’m also addicted to Tylenol, multivitamins, sumatriptan, and the several prescription medications I have been taking daily for years. Also, during allergy season, I’m addicted to Claritin.
There is an expression in the army: “One guy shits his pants; everyone wears a diaper.”
I am sure some people misuse zolpidem. I am also sure that some people misuse laxatives, coffee, Benadryl, and Snickers bars. I don’t see scare articles about those implying that there is no good use at all for those things. I also don’t see clinics dedicated to recovery from misuse of any of those things.
I don’t think that a recovery clinic for prescription drugs is inherently bad any more than zolpidem is inherently bad; however, a recovery clinic sponsoring scare articles to drum up business makes me grumpy. If the article were less mendacious, I might be able to let it go, but this one vilifies a medication that makes my life very much easier. For profit.
 CAVEAT: This is a general statement to make a point. I am not a doctor, and if I were, I would not give strangers advice over the internet. If you have been needing pain medication, or cold symptom relievers for longer than the label indicates is ideal, follow the printed advice, which is usually to see an actual doctor after a particular (short) period of using the product, typically about two weeks.
Which is to say, not insomniacs. [note added]
8 Apr., 2021
My brother is having his own sleep woes these days. He just went in for his own sleep study, his first—well, really second, but the previous one was scrapped, albeit, he was prescribed a CPAP machine a few years before the study.
How did he get a CPAP without a sleep study? That’s what I asked. Apparently, it is possible to have a home-based apnea test these days. It starts with a spouse or significant other complaining about your snoring, coupled with daytime tiredness, and then a doctor can prescribe a home-based test that monitors your breathing while you sleep.
A standard sleep study in a clinic monitors your breathing, your heartrate, your blood oxygen saturation, your temperature, and a number of different brainwaves. Possibly even your galvanic skin response. A full sleep study in a lab records your REM sleep, and your other stages of sleep, as well as the order of the stages. It wants to know not just if you are breathing, but if you are breathing effectively, and even things like, did you hold your breath momentarily when you went into REM sleep? Do you move during any stage of sleep? Do you breathe heavily or especially deeply at any point? Do you wake up for reasons other than your breathing having stopped?
The CPAP is a great solution for people who sleep poorly due very specifically to apnea. I’ve been tested for apnea twice, and not shown any signs of it. I could tell everyone was disappointed (it’s an easy fix, which few other sleep problems have), even though there was no real reason to suspect it was behind my issues, since it occurs almost exclusively in people who are overweight. That’s a bit of a catch-22, since poor sleep can cause a person to gain weight.
So my brother was swimming along with the CPAP for a while, but has recently been getting spells of exhaustion during the day—not just drowsiness, or lack of energy, or “I need a cup of coffee,” but real inability to even stand up from his desk, or hold up his own head, with objective signs, such as very poor reflexes, and lack of a startle response. The first thing his doctor suspected was Chronic Fatigue Syndrome, and tested him for antibodies for a number of viruses that are suspected causes of CFS. None of them panned any flakes.
After a year of tests and things I won’t enumerate, his doctor decided he needed a sleep study to check for narcolepsy. I asked why they didn’t just go ahead and try a narcolepsy drug and see if it had any effect. The answer seems to be that narcolepsy drugs are so addictive, and have such a high street value, that doctors need to be able to produce good evidence that a drug, such as Adderall, Concerta, or a plain old, $2.50 / month dextroamphetamine is really medically necessary. My brother might himself need documentation if he were ever tested for drugs at work, or tested following a car accident (even if he was not at fault). Sometimes, these days, it isn’t enough to say that your controlled substance you tested positive for was prescribed by a licensed physician. You employer wants to know that some test exists, verifying your need for the drug.
Yes, the ADA secures your privacy in that you don’t have to reveal the reason for a prescription (narcolepsy, ADD, or whatever other reason a person might take a drug like Concerta), so the diagnosis itself may remain private, but if the drug is a controlled substance, particularly one you are bringing onto the work site, the fact of the diagnosis may not remain private. An employer can require a letter from a doctor stating something to the effect that “Josh Q is a patient under my care; based on standard treatment guidelines, I have prescribed Adderall for Mr. Q, following an exam that showed this treatment to be appropriate.”
And, unfortunately, given the political climate around prescriptions, Josh’s doctor needs to retain documentation for himself showing the reason for every pill he prescribes. If his prescription records are ever audited, he will need to show (redacted, which is to say, anonymous) patient files, demonstrating the doctor’s reasons for the treatments he chose.
So Josh is going around again, trying to get a sleep study completed. They made some kind of error the first time, told him the data were compromised, and scrapped his first study. This was after he’d waited four months to get into the clinic.
I was a little surprised to hear Josh say “narcolepsy.” I knew he got tired during the day sometimes, but so do I, when I’ve been sleeping 3 hours a night. Josh doesn’t have attacks of cataplexy—he isn’t standing up, talking to me, and then suddenly down on the floor, snoring, which was what I thought happened with narcolepsy. I thought it was like a form of epilepsy, but instead of thrashing, or staring, or shaking, you fell asleep.
Apparently not. Apparently, it can be more like feeling the way I feel when I’ve had three nights in a row of less than four hours’ sleep, except Josh will have been sleeping 10 hours a night, and taking a couple of naps every day. It seems that people with narcolepsy do some of the same things I do when I am in serious sleep deprivation—hallucinate when awake, and fall directly into REM sleep when they do sleep.
So, basically, narcolepsy is sleep-deprivation behavior in spite of getting a lot of sleep.
That explains why, when I have had sleep studies, it is hard to convince the proctors that I don’t have narcolepsy. Often by the time I go in for a sleep study, I am very sleep-deprived, and wake-dreaming; seeing things; going directly into REM sleep; and possibly even sleeping a fair amount for someone with insomnia, if my doctor has ordered medication for me, because he wants to make sure I am not awake all night, so there is data from the study.
So, I sleep maybe, 4 to 6.5 hours a night. My brother sleeps 10 to 12. On average, we’re perfect.